Wednesday, March 30, 2011

With the weird weather in Utah it is no wonder that everyone is confused about which season it actually is! This afternoon I went with Mommy to the Black Bear Diner to pick up some take out. While we waited, the cashier asked Mommy if I wanted a balloon. She was expecting your run of the mill balloon on a string but instead she handed over this black bear snow shoeing!

Maybe that is what got me thinking, but I decided to pull out my bag with my winter accessories - gloves, coat, boots and hat - and try them on. Then I got down on the floor and made a "snow" angel. The boys even participated (unwillingly) and they sure are cute!

Because that is just how we roll in my household just over 48 hours after the princess birthday party I am now sporting a fever, massive sneezing and a runny nose. Hmmm...let's see how many colds will this make for me in less than a year? TOO MANY!!!!

So despite the beginning stages of another cold I had a task to accomplish tonight. The reason the bean ended up in my nose a few nights ago is that I found some beans in the pantry and after watching too many Caillou episodes decided I needed to plant my bean seeds. Daddy soaked them overnight and today I hit him up as soon as he walked in the door after work to get those suckers planted. Hopefully they grow as fast as Mommy remembers from her elementary school years otherwise it could be a long painful process of checking every few minutes to see if anything has changed!

Sunday, March 27, 2011

With a few inches of snow on the ground this morning my hopes were dashed of getting to ride my big girl bike outside today. Yesterday, Daddy let me ride it around in the garage with the door closed to keep warm. For not really riding it since getting it for my birthday last summer I am already a pro racing around and around the garage.

So today it was a lazy day at home. We didn't accomplish much of anything besides catching up on the laundry. Mommy was noticing today how much of a talker I have become. She needs to listen really closely and still only gets about 50% of what I am trying to say but I have a lot to say at this point! It used to be that our conversations existed mostly in one or two word signs/words that Mommy would then piece together into a sentance. Now I really am talking in sentances. One of our conversations went like this:

There was a time Mommy wasn't sure I would ever be able to develop the skills to produce speech. Even though I am difficult to understand I have demonstrated that I am not only perfectly capable of producing speech but I am doing it pretty close to what a typical three year old would do despite hardly making any sounds before the age of 2. In fact, Mommy is noticing that it is sometimes difficult to get a word in edgewise, she has to point to her ear and ask me to "listen" while she talks!

My parents got to have a date night last night when they went to see Larry the Cable Guy, Bill Engvall and Jeff Foxworthy at the Energy Solutions Center. I was just fine with that because I got to spend the night at Grandma and Papa Smith's and Coco, Pandy and Sadie kept me company during the night.

Mommy came to get me right after I woke up this morning because we had some things to get done. We had to go home and get me ready so I could go with her to pick out a birthday gift for Sophia. We had fun shopping in the girly aisles and ended up with lots of fun Disney Princess items. I am not really into the Disney Princesses just yet but I am all about the shopping. We went home to grab my feeding and then headed to the party. Jackson was already there and he and I got spend some time outside playing before the party was in full swing. I wasn't interested in playing the games but once the pinata was up (it was the ribbon pulling type) I was excited to help and Traci helped me get my fair share of candy!

After all the excitement of the party there was definately no hope for a nap. At 7 pm, Brandy the supervisor with the nursing agency stopped by for a supervisory visit. Mommy signed the paperwork and said to Brandy, "It won't be long until she is signing these herself. Well, once she learns how to spell that is." To which I promptly replied, "P-E-Y-T-O-N, Peyton!" Smart as a whip I am!

Happy Happy Birthday to Mommy! You won't see a picture of her because she is usually on the other side of the camera. But she is happy to report that she got a brand new camera for her birthday so maybe sometime in the future she'll post a photo of her (yeah right)! Until then she will take more pictures of me!

Mommy's day started with cards from Daddy and I waiting in her car. Then on to work where Wade and Paul presented her with a card and a beautiful purple orchid. She got lots of well wishes from people at work and even a few offers of a nice birthday lunch but she was a little too busy and will take them up on it next week instead.

After work was over she came to pick me up and I helped her open up a bunch of fun gifts with an Easter theme. (So now Mommy has figured out how to get me to open my own presents - let me see them ahead of time and then wrap them up)! Then Grandma and Papa Smith gave her a gift certificate to The Firehouse to get her car washed. Now that Mommy's car has gone through 3+ years with me it is in dire need of a good detail. Daddy got home later and all three of us headed out to dinner together. Mid-week it was nice and quiet and I had a good time sampling sugar, salt, pepper and the butter on the table. Daddy let Mommy open up her new camera which she is excited to use - but unprepared to read all the instructions. Luckily, Daddy reads up on these things and tells her what she needs to know.

Wednesday, March 23, 2011

It was just one of those days - the kind that leaves Mommy and Daddy ready to pull every hair out of their head because that can't be any more painful then the long minutes until my bedtime! When Mommy came to pick me up today it was pretty clear that I was in a mood. Earlier in the day I had a "hissy fit" when I wanted to wear a particular sweater despite already being dressed for the day. When Mommy tried to get me ready to go it took several attempts to wrangle me to get my shoes and socks on and several more attempts to keep them on long enough to get to the car.

On the way home, Mommy said I was being so crazy that she should drop me off at the zoo. That got me to thinking and a few minutes later I asked Mommy, "where are we going?" Mommy let me know we were headed home and I piped up, "go to the zoo?" Mommy had to try to backtrack and explain that she was just teasing me but I thought it sounded like a great idea!

Shortly after arriving home, I demanded bunny fruit snacks, Dora fruit snacks and popcorn. Although I only lick them a few times before throwing them to the dogs, I wanted more bunny fruit snacks. When Mommy explained that we didn't have any more bunny fruit snacks but how about Dora fruit snacks I freaked out - throwing my HME across the room, throwing my bowls of snacks right after them and finally throwing myself on the floor in protest. Mommy tried to explain that we could go get more from the store the next time we went but that was just not soon enough!

This was one of those nights that my parents count down the minutes before my favorite nurse Michelle arrives. 35 minutes and counting.....

For those who have read the blog for awhile, I have shared several times the internal struggle I have had about Peyton's trach. It took me much longer than Travis to accept the trach and the role it will cotinue to play in our lives - however long that may be. Although I will never stop hoping that Peyton will eventually be decannulated, I no longer see the trach as a barrier to life now I see it as a mechanism to living life as fully as possible for Peyton. For me it was my moment of truth when I came to that realization for myversionofmylife it was her "aha" moment. Please take a minute to read her words - not only are they beautifully written but they capture so perfectly the same struggle I had been having. It's not often I "meet" people who truly understand the emotions that come along with this journey so when I read posts like what myversionofmylife has written and know that she totally gets it I feel a little less alone in the world.

Sunday, March 20, 2011

It's been a stressful few days fighting my 7th upper respiratory infection in 7 months. Thursday my Papa Smith had foot surgery so Daddy stayed home to take care of me while Grandma Smith was with him at the surgery center. By early afternoon when Mommy came home I was at my worst with a high fever and feeling awful. Mommy wasn't feeling much better since she has been fighting her 7th upper respiratory infection in 7 months too! (Aren't I sweet - I share everything with Mommy!) I was pretty unhappy and ended up falling asleep around 3 pm and slept for almost three hours.

Since it was still touch and go with me, Mommy let Grandma Smith know that she would stay home with me on Friday so Grandma wouldn't be caring for two patients at once. Thursday night I slept okay but wasn't coughing up the gunk like I needed to but I made up for it Friday. Mommy can't even begin to count how many HME's we went through during the day. But she wasn't complaining because it meant I was getting all the junk up out of my lungs. Mommy always knows where in my recovery I am by the color of the secretions - they are normally clear but when I start getting sick they turn cloudy white then yellow then green and sometimes even brown (blood) before going back the other direction. Friday was a yellow/green/brown day and Saturday was more of a yellow/green day - definately showing some signs of improvement. Mommy even let me come to the store with her on Saturday to get some groceries. Unlike most kids, when I am sick and coughing as long as I have on my HME I am keeping most of the germs contained from everyone else. Without a nap Saturday during the day, I was asleep by 9:30 which Mommy appreciated!

Saturday, March 19, 2011

Yep, I am sick! The fever has come back and I am coughing up all kinds of stuff. But it was my follow up appointment for my jaw surgery so Grandma and I met up with Mommy at Primary Children's. Dr Morales was only running about 30 minutes late this time so we were off to a pretty good start. When he came in he took a quick look at the pin sites and thought they looked good. He didn't seem concerned about the three day fever with no other symptoms because he said if I had an infection at the surgery sites we would know. Now, I think anyone would say Dr Morales is a great surgeon. But I would be surprised if many people would say he is very personable. Mommy is a firm believer that any doctor's working with pediatric patients should have great bedside manners but she hasn't been so lucky in the ENT/plastic surgery department so far. As Dr Morales started to walk out the door Mommy called him back to ask about the hardware. At my last appointment he had said he was going to remove the hardware that was on the pins and replace it with less bulky hardware for the remaining month until the removal surgery. When Mommy asked him about it he asked, "Did I say we were going to do that?" Mommy said yes, that was what was discussed at the last appointment. Rather nonchalantly he responded, "That's too bad since I didn't bring the tool". Mommy did her best not to retort back "well I sure as hell didn't bring the tool" and decided to let it go. We would leave the bulkier hardware on until the end since it wouldn't cause any problems. Grandma wanted Mommy to ask about the size of the airway so when Mommy did he said he couldn't really see that on the xray - that would be the purpose of the sleep study later. Mommy knew from my previous surgeon that it wouldn't be a good idea to remove the trach until after the palate surgery was complete since it would further restrict the airway. So Momy verified with him that the plan would not be to complete a sleep study until after the palate surgery. Dr Morales responded, "You're not anxious to get the trach out are you?" That was pretty much the last straw for Mommy. She let him know that she wouldn't push to get a trach out before all the necessary surgeries were completed but in the back of her mind she was wondering why she was defending herself. After all, why shouldn't we be anxious to get the trach out? Who wouldn't want to get it out as soon as it was possible to do so? Mommy is still not sure if that was his way of trying to joke around but regardless of how he intended it to come across she was left wondering what is up with these doctors? She had a moment of deja vu when she was at an appointment with the head of pediatric ENT at UC Davis and his comment was "I'm sure you want to get the trach out so she can go swimming." Who are these people? Do they need to be trached for 24 hours so they have some idea what life with a trach is really like and stop with the insensitive comments? Mommy is pretty tolerant of the general public when it comes to comments and questions about the trach but when it comes to doctors who specialize as ENT's or craniofacial surgeons she is still dumbfounded at these types of comments.

Although I am smiling in these pictures it is only after a long hour of crying earlier in the day! Today was x-ray day. Mommy loathes x-rays about as much as IV's because she knows it will be a process fraught with tears. Today we were accomplishing two purposes though. In addition to x-rays of my jaw for Dr Morales to see how the bone is healing, I am finally getting an x-ray of my shoulders so that we can really see what is going on with them.

Mommy came to pick me up from Grandma's this afternoon before nap time so I should have known right away something was up. Mommy explained we were going to get pictures taken of the hardware and I was relatively calm until we walked into the x-ray room at Riverton Hospital. I'm not an idiot and as soon as I saw the machines I knew what was really going on.

There were only three shots that were needed - one on each side of the jaw and then one of the shoulder. Now Mommy had called weeks ago to ask about sedating me since this is never a good process. The technician assured Mommy several times that it would be no big deal they took x-rays of children all day long after all. But this technician had obviously never met me before!

First up was the shoulder x-ray. I'm sure the technician thought this would be a quick one and then on to the jaw but she was sadly mistaken. With Mommy and the technician holding me down it took multiple times and about 20 minutes to finally get an image that would work. Each time the tech would take a shot, Mommy and I would have to wait several minutes until they saw the image and decided if it was acceptable. Most of the time they weren't and we would have another go round. So 20 minutes in and now we were on to the jaw. The tech learned her lesson, though, and grabbed another tech to help this time around. There was no way they were getting the panoramic ray the doctor would have wanted so they settled on the shot of each side individually. It sounds simple but I am strong and I was pissed and I wasn't going to make it easy on them. I was starting to tire out though, and in between shots Mommy would hold me on her lap and I would sob until I fell asleep. Just about the time I would nod off it was time for the next try. This went on about 40 minutes before they finally had two shots that were passable. I had been asking Mommy after each x-ray if we were all done. This time when she said that we were I stopped crying immeadiately and started talking a mile a minute. The tech looked shocked - gone was the child that she had been holding down for the last 60 minutes and in her place was my animated, happy self. I dno't think she'd ever seen such a quick emotional turn around. Like I said - she hadn't met me before!

So after three days of constant fever when it finally went away yesterday, Mommy figured we were out of the woods. But tonight I started coughing and since Mommy was already battling a sore throat and cough she knows where this is going - upper respiratory infection here I come!

Monday, March 14, 2011

The horror of the earthquake and tsunami in Japan is unbearable to watch. There are so many families whose lives will never be the same. As soon as I heard of it, there was a fleeting thought of how Travis and I would handle such a situation. Any emergency situation is challenging but add to that a child with medical needs like Peyton and what may seem like a minor inconvenience can become serious very shortly.

I always knew tracheostomy.com was a family but I am amazed and humbled at the wonderful people on the forum yet again. There is a family currently caught in Japan with a little boy who is trached and gtubed like Peyton. They were in the epicenter and made it through the earthquake and were eventually able to get him to a hospital but the situation was getting dire. Without a phone, his mother posted to the tracheostomy.com forum with her contact information and asked that someone contact the Canadian embassy on their behalf. Another trach mom got right to work and made sure that the embassy is aware of this family and their need to get out of Japan and back home to Canada.

God bless Maleek and his family that they can make it safely home to Canada. God bless Susan and her family for jumping in to help. God Bless Cynthia who created tracheostomy.com and provided the mechanism for something like this to happen.

Long time no blog! Now that the pin turning has stopped life has returned mostly to normal. I am not back at preschool yet and getting anxious as the weather is staring to warm up. I can't wait to get outside again to play.

On Wednesday night, Mommy, Aunt Kristin, Jackson and I met up with cousin Traiton, Uncle Jason, Chloe, Sophia and Noy to see Disney on Ice. While we waited for them to take the ice, Jackson and I played with our very expensive Disney themed toys weapons. As soon as the lights went down, though, we were super excited to see all of our favorites. Now I am most definately not a Disney princess girl. I have never seen a single movie but I recognized them from my pajamas and signed to Mommy "sleep clothes".

Thursday night I spiked a fever and although my parents waited all weekend for it to develop into an upper respiratory infection it never did - however the fever never really went away. Come Monday morning if I am still running a fever Mommy will call the surgeon's office to see if they want to see me sooner than Wednesday.

On Saturday morning, Mommy and I drove Daddy to the Harley Davidson dealership to pick up his 2009 Street Glide. The salesman were great and gave me a HD monkey to keep me entertained while my parents signed the paperwork. Good thing the weekend was pretty nice so Daddy got a chance to get in several rides.

Despite a lingering fever, on Sunday my parents took me to a school to let me play on the equipment but it was still too windy to be comfortable. I'd been so good all weekend, my parents decided to head to the mall so I could ride the carousel. After two rides, Mommy convinced me to get off where I got to ride a Bob the Builder machine. As we were walking around I heard the sound of a train and sure enough, there is now a train that offers rides around the mall. Once my parents figured out where it loaded up, Mommy and I hopped on for a ride. I could have stayed on all day but my parents finally convinced me that it was time to head home.

Tuesday, March 1, 2011

My Version of My Life had a great posting from a photo contest she was entering (topic in the title). I doubt I will win anything - it is not great photography - but man does it tell a story. This is Peyton holding on to a finger of her Daddy in the NICU at UC Davis a few weeks after her birth. Because her thumb was underdeveloped you can see her holding on with her fingers because she couldn't grasp with her thumb. At a year old that thumb was removed and her index finger was rotated to the thumb position. We don't have many photos of that thumb. It my not have worked well but is definately bittersweet to see it now as it is a part of Peyton that we will now only see in photos and the hand casting Travis thoughtfully created before the surgery.